11.17.2009

perspective

nashy boy turns three on sunday. whaaaaat?!?! crazy, i know. i have no plans. whaaaaaat?!?! crazy, i know. it's so unlike me to not plan a party. part of it is because bevie will be in phoenix. and part of it is because i am trying to take a chill pill. that doesn't mean there won't be cake and presents and excitement, but there will be no themed party with decor and custom invites and coordinating everything. he'll be okay, right? right???

here's the deal: since my diagnosis with MS i've sort of been on this mission to do everything i can while i can do it. learn new things, make sure everyone i love (especially my kids) really knows i love them by going completely overboard with parties and gifts and yada yada yada. i never say no. i volunteer for more than i should. i take pictures of everything because i'm afraid that my MS will take memories away from me and only leave me with the pictures i thought to take when i could. i'm afraid that my kids will only know me as the mom who needs help brushing her teeth and not the mom who made dinner for her neighbors and sewed their halloween costumes and threw them the best parties they could imagine. i don't want my disease to be the first thing anyone thinks of when they think of me.

BUT

there have been some developments in MS research that are giving me a lot of hope. i got a text from my sister-in-law the other night to turn on the news. as soon as i did, i felt as though i'd been hit by a ton of bricks. instant emotion overtook me. there on the screen were the words "a cure for MS?" and then a two-minute segment on a procedure that is SO close to becoming a reality. so close to changing my life and the lives of so many i know. what if!?!??!!? what if they really can "reset" my immune system through one round of chemo? what if this disease is just a phase in my life that i will be able to look back on? what if i don't have to worry about my children ever getting it? what if i can live my life without the fear of my MS taking me down at any moment?

i have been feeling completely overwhelmed by this news. it may be years away, but it is looking like the cure will be around when i need it most. i can handle my life as is. so my goal is to do everything i can to keep my MS from developing any further. and part of that involves taking a serious chill pill. so that's what i'm going to try to do.

you know how you hear people say things like "i am so thankful for this challenge/disease/struggle." and you think "you're an idiot. why would you want this in your life?" well, i'm beginning to understand why anyone would say such a thing. i don't love my disease-i hate it. but that hate pushes me to do things i wouldn't otherwise do. it makes me want to be a better person while i still have the ability to try and do it. it makes me appreciate things in the moment. if i am someday physically cured, i will never be the same mentally and i will be very thankful for that. i will have been blessed with a new perspective on life. i already have been, but it would be a million times better if i had a body that could keep up with me.

update: as laurie mentioned in the comments, this treatment is also working on patients with several other types of autoimmune diseases-including lupus, so it's good news for a LOT of people.

13 comments:

gina bina said...

So much to say about this here post.
1. I can't believe Nash is 3. I met him at what, about 9 months?? Where has the time gone?
2. Your MS isn't the first thing I think about with you. In fact, I typically forget you even have it. That could be a good thing or a bad thing.
3. The new research sounds amazing. It's amazing to live in a day and age where things like this are actually possible. You could have a cure for MS and I could have a turkey-baster baby! Miracles.

Laurie said...

The new research is going to be great, I have two friends with lupus and they're looking into the same treatment (the reset with chemo) with that disorder as well. I really hope they can get it all ok'ed in a reasonable amount of time.

buddens said...

I like this.

lisset said...

i so hope that forks over the mula so research can continue! i hope! i hope! i hope!
and the fact that nash is turning 3 only makes it more real that e is already there. how about our kids stop growing up for a minute, eh?

Stacy said...

Liz you are so amazing! I totally look up to you for all that you do!

naomi said...

I just read an article about a guy in England who had stem cell therapy and is actually free of MS symptoms now. They're making huge leaps and bounds with chemo resets with the stem cell research being used as building blocks - pretty decent successes are being projected!! I really hope science pulls through on this quickly.
I can't believe Nash is almost three. And seriously, Nash wouldn't notice if he didn't have a birthday celebration so anything you do will be a treat for him. The only thing I remember of my third birthday is not wanting to wear a skirt and having an issue blowing out candles. Wish we could be there to celebrate with you.

emilie s. d. p. said...

This post had me tearing up.
I've been hearing a lot of the same thing. I just read an article that mentioned how soon many of these treatments will be available so I'll keep praying that the test trials happen successfully and speedily so that they can get all this on the market soon.

Alifinale said...

YAY for Mashy Bay! 3 year olds are so not the funnest but still pretty great. I decided that a party every other year will do for the kiddos. No need to set myself up for stress every year and Emery didn't even care that all we did was eat cupcakes at the park with friends this year.

Very exciting news. I love your thoughts and perspective and I can't even imagine what hope such research brings. It gives me hope too. And you are not MS - you are Liz.

Bri!!! said...

WOOHOO! This made my day.

bulkleybunch said...

3 year olds are way worse than 2 year olds, just warning ya! hurray for chemo, let's kill all those piece of crap mutant lesions or whatever they are. love you. :)

J-ROK said...

I'm late reading this, but what a wonderful post!!!! Hooray for research :)

Emilie May said...

nash is my favorite person in the world. maybe the universe balanced the scale by putting nash on the opposite side of your ms. because i don't have a disease, my kids will be average. can't have it all.

Chocolates for Breakfast said...

just makes you want to go out and raise money for research or donate or something...excellent news! the possibilities make me so happy!